Macmillan, 2006), 256.
“cruel, blundering and inefficient”: Kevles, In the Name of Eugenics, 263.
“moral obligation of the medical profession”: Departments of Labor and Health, Education, and Welfare Appropriations for 1967 (Washington, DC: Government Printing Office, 1966), 249.
“Near the end of his terms of office”: Victor McKusick, in Legal and Ethical Issues Raised by the Human Genome Project: Proceedings of the Conference in Houston, Texas, March 7–9, 1991, ed. Mark A. Rothstein (Houston: University of Houston, Health Law and Policy Institute, 1991).
“needle in a haystack”: Matthew R. Walker and Ralph Rapley, Route Maps in Gene Technology (Oxford: Blackwell Science, 1997), 144.
A Village of Dancers, an Atlas of Moles
Glory be to God for dappled things: W. H. Gardner, Gerard Manley Hopkins: Poems and Prose (Taipei: Shu lin, 1968), “Pied Beauty.”
We suddenly came upon two women: George Huntington, “Recollections of Huntington’s chorea as I saw it at East Hampton, Long Island, during my boyhood,” Journal of Nervous and Mental Disease 37 (1910): 255–57.
In 1978, two geneticists: Robert M. Cook-Deegan, The Gene Wars: Science, Politics, and the Human Genome (New York: W. W. Norton, 1994), 38.
By studying Mormons in Utah: K. Kravitz et al., “Genetic linkage between hereditary hemochromatosis and HLA,” American Journal of Human Genetics 31, no. 5 (1979): 601.
When Botstein and Davis had first discovered: David Botstein et al., “Construction of a genetic linkage map in man using restriction fragment length polymorphisms,” American Journal of Human Genetics 32, no. 3 (1980): 314.
The poet Louis MacNeice once wrote: Louis MacNeice, “Snow,” in The New Cambridge Bibliography of English Literature, vol. 3, ed. George Watson (Cambridge: Cambridge University Press, 1971).
In 1978, two other researchers: Y. Wai Kan and Andree M. Dozy, “Polymorphism of DNA sequence adjacent to human beta-globin structural gene: Relationship to sickle mutation,” Proceedings of the National Academy of Sciences 75, no. 11 (1978): 5631–35.
“We can give you markers”: Victor K. McElheny, Drawing the Map of Life: Inside the Human Genome Project (New York: Basic Books, 2010), 29.
“We describe a new basis”: Botstein et al., “Construction of a genetic linkage map,” 314.
“like watching a giant puppet show”: Marlene Cimons, “It’s all in the family: As doctors study the mysteries of cancer and other deadly diseases, families may turn out to be the best laboratory,” Los Angeles Times, February 10, 1991.
“waiting game for the onset of symptoms”: “New discovery in fight against Huntington’s disease,” NUI Galway, February 22, 2012, nuigalway.ie/about-us/news-and-events/news-archive/2012/february2012/new-discovery-in-fight-against-huntingtons-disease-1.html.
“I don’t know the point where”: Gene Veritas, “At risk for Huntington’s disease,” September 21, 2011, curehd.blogspot/2011_09_01_archive.html.
Milton Wexler, Nancy’s father, a psychiatrist: Details of the Wexler family story came from Alice Wexler, Mapping Fate: A Memoir of Family, Risk, and Genetic Research (Berkeley: University of California Press, 1995); Lyon and Gorner, Altered Fates; and “Makers profile: Nancy Wexler, neuropsychologist & president, Hereditary Disease Foundation,” MAKERS: The Largest Video Collection of Women’s Stories, makers/nancy-wexler.
“Each one of you has a one-in-two”: Ibid.
That year, Milton Wexler launched: “History of the HDF,” Hereditary Disease Foundation, hdfoundation.org/history-of-the-hdf/.
Leonore died on May 14, 1978: Associated Press, “Milton Wexler; Promoted Huntington’s Research,” Washington Post, March 23, 2007, washingtonpost/wp-dyn/content/article/2007/03/22/AR2007032202068.html.
Seventeen months later, in October 1979: Wexler, Mapping Fate, 177.
“There have been a few times in my life”: Ibid., 178.
At first glance, a visitor to Barranquitas: Description of Barranquitas from “Nancy Wexler in Venezuela Huntington’s disease,” BBC, 2010, YouTube, youtube/watch?v=D6LbkTW8fDU.
When the Venezuelan neurologist Américo Negrette: M. S. Okun and N. Thommi, “Américo Negrette (1924 to 2003): Diagnosing Huntington disease in Venezuela,” Neurology 63, no. 2 (2004): 340–43, doi:10.1212/01.wnl.0000129827.16522.78.
“It was a clash of total bizarreness”: Jerry E. Bishop and Michael Waldholz, Genome: The Story of the Most Astonishing Scientific Adventure of Our Time (New York: Simon & Schuster, 1990), 82–86.
In August 1983, Wexler and Gusella: James F. Gusella et al., “A polymorphic DNA marker genetically linked to Huntington’s disease,” Nature 306, no. 5940 (1983): 234–38, doi:10.1038/306234a0.
The candidate gene had been found: Karl Kieburtz et al., “Trinucleotide repeat length and progression of illness in Huntington’s disease,” Journal of Medical Genetics 31, no. 11 (1994): 872–74.
“We’ve got it, we’ve got it”: Lyon and Gorner, Altered Fates, 424.
A remarkable feature of the inheritance: Nancy S. Wexler, “Venezuelan kindreds reveal that genetic and environmental factors modulate Huntington’s disease age of onset,” Proceedings of the National Academy of Sciences 101, no. 10 (2004): 3498–503.
In 1857, a Swiss almanac: The Almanac of Children’s Songs and Games from Switzerland (Leipzig: J. J. Weber, 1857).
“Inside the pericardium”: “The History of Cystic Fibrosis,” cysticfibrosismedicine, cfmedicine/history/earlyyears.htm.
In 1985, Lap-Chee Tsui: Lap-Chee Tsui et al., “Cystic fibrosis locus defined by a genetically linked polymorphic DNA marker,” Science 230, no.